Reflections of COVID-19 Pandemic on Autism Spectrum Disorder: A Descriptive Case Study

Yıl 2021, Cilt: 9 Sayı: 1, 28 - 50, 30.01.2021

Sunagül Sani-bozkurt Gülden Bozkuş-genç , Gizem Yıldız

Öz

The aim of this study was to explore type of studies implemented for the autism spectrum disorders (ASD) community by institutions that directly deal with ASD during the COVID-19 pandemic in Turkey and in the world. The descriptive case study design was used in the study. The contents on the websites of the institutions were analyzed through document analysis. According to the results, it was observed that the data consisted of supporting contents related to education, health, and public policies regarding the COVID-19 process and that the contents were frequently presented through webinars, visual representations, electronic text sources, online communication platforms, and social media environments. During this process, informative studies were frequently carried out and practical studies were rarely conducted. While it is considered that institutional studies both in Turkey and in the world may serve as an example to other institutional studies, it is considered that the diversity of these examples should be increased through cooperation between institutions.

Anahtar Kelimeler

Coronavirus, Covid-19, Autism spectrum disorders, parents

Kaynakça

• Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, orfragile X syndrome. American Journal on Mental Retardation, 109(3), 237-254. https://doi.org/10.1352/08958017(2004)109%3C237:pwacim%3E2.0.co;2
• Altable, M., de la Serna, J. M., & Gavira, S. M. (2020). Child and adult autism spectrum disorder in COVID-19 Pandemic. PsyArXiv, https://doi.org/10.31234/osf.io/kt3a4
• Baird, G., Charman, T., Cox, A., Baron-Cohen, S., Swettenham, J., Wheelwright, S., & Drew, A. (2001). Screening and surveillance for autism and pervasive developmental disorders. Archives of Disease in Childhood, 84(6), 468-475. http://dx.doi.org/10.1136/adc.84.6.468
• Bakér-Ericzen, M. J., Brookman-Frazee, L., & Stahmer, L. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research & Practice for Persons with Severe Disabilities, 30(4), 194-204.https://doi.org/10.2511%2Frpsd.30.4.194
• Bakkaloğlu, H. (2020). Türkiye’de otizm spektrum bozukluğuna yönelik erken çocukluk müdahale programları raporu. Tohum Otizm Vakfı. https://www.tohumotizm.org.tr/wpcontent/ uploads/2020/05/Deg%CC%86erlendirme_ve_Gelisim_Raporlari_4-1.pdf
• Banda, D. R., & Grimmett, E. (2008). Enhancing social and transition behaviors of persons with autism through activity schedules: A review. Education and Training in Developmental Disabilities, 43(3), 324-333.
• Bejerot, S. (2007). An autistic dimension: A proposed subtype of obsessive-compulsive disorder. Autism, 11(2), 101-110. https://doi.org/10.1177%2F1362361307075699
• Bishop-Fitzpatrick, L., Minshew, N. J., Mazefsky, C. A., & Eack, S. M. (2017). perception of life as stressful, not biological response to stress, is associated with greater social disability in adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(1), 1-16. https://doi.org/10.1007/s10803-016-2910-6
• Bozkurt, A., Jung, I., Xiao, J., Vladimirschi, V., Schuwer, R., Egorov, G., Lambert, S. R., Al-Freih, M., Pete, J., Olcott, Jr., D. Rodes, V., Aranciaga, I., Bali, M., Alvarez, Jr., A. V., Roberts, J., Pazurek, A., Raffaghelli, J. E., Panagiotou, N., de Coëtlogon, P., & Paskevicius, M.. (2020). A global outlook to the interruption of education due to COVID-19 pandemic: Navigating in a time of uncertainty and crisis. Asian Journal of Distance Education, 15(1), 1-126. https://doi.org/10.5281/zenodo.3878572
• Bozkurt, A., & Sharma, R. C. (2020a). Emergency remote teaching in a time of global crisis due to CoronaVirus pandemic. Asian Journal of Distance Education, 15(1), i-vi. https://doi.org/10.5281/zenodo.3778083
• Bozkurt, A., & Sharma, R. C. (2020b). Education in normal, new normal, and next normal: Observations from the past, insights from the present and projections for the future. Asian Journal of Distance Education, 15(2), i-x. https://doi.org/10.5281/zenodo.4362664
• Bozkuş-Genç, G. (2019). Rutinler ve önemi. Araştırmadan Uygulamaya Özel Eğitim Dergisi, 4, 78-81.
• Bowen, G. A. (2009). Document analysis as a qualitative research method. Qualitative research journal, 9(2), 27-40. https://doi.org/10.3316/qrj0902027
• Bryman, A. (2012). Social research methods (4. Baskı). New York: Oxford University Press.
• Cao, W., Fang, Z., Hou, G., Han, M., Xu, X., Dong, J., & Zheng, J. (2020). The psychological impact of the COVID-19 epidemic on college students in China. Psychiatry Research, 112934. https://doi.org/10.1016/j.psychres.2020.112934
• Cassidy, S. A., Nicolaidis, C., Davies, B., Rosa, S. D. R., Eisenman, D., Onaiwu, M. G., Kapp, S. K., Kripke, C. C., Rodgers, J., & Waisman, T. (2020). An expert discussion on autism in the COVID- 19 pandemic. Autism in Adulthood, 2(2), 1-12. https://doi.org/10.1089/aut.2020.29013.sjc
• Cooper, K., Smith, L. G. E., & Russell, A. (2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology, 47(7), 844-854. https://doi.org/10.1002/ejsp.2297
• degli Espinosa, F., Metko, A., Raimondi, M., Impenna, M., & Scognamiglio, E. (2020). A model of support for families of children with autism living in the COVID-19 lockdown: Lessons from Italy. https://doi.org/10.31234/osf.io/48cme
• Dell'Osso, L., Carpita, B., Gesi, C., Cremone, I., Corsi, M., Massimetti, E., Muti, D., Calderani, E., Castellini, G., Luciano, M., Ricca, V., Carmassi, C., & Maj, M. (2018). Subthreshold autism spectrum disorder in patients with eating disorders. Comprehensive Psychiatry, 81, 66-72. https://doi.org/10.1016/j.comppsych.2017.11.007
• den Houting, J. (2020). Stepping out of isolation: Autistic people and COVID-19. Autism in Adulthood, 2(2) 1-3. https://doi.org/10.1089/aut.2020.29012.jdh
• Devercelli, A. (2020). Supporting the youngest learners and their families in the COVID-19 (Coronavirus) response. World Bank. https://blogs.worldbank.org/education/supporting-youngest-learners-andtheir- families-covid-19-coronavirus-response
• Flores, M., Musgrove, K., Renner, S., Hinton, V., Strozier, S., Franklin, S., & Hil, D. (2012). A comparison of communication using the Apple iPad and a picture-based system. Augmentative and Alternative Communication, 28(2), 74-84. https://doi.org/10.3109/07434618.2011.644579
• Glesne, C. (2011). Becoming qualitative researchers: An introduction (4. Baskı). NEW York: Perason Education Inc.
• Gray, C. A., & Garand, J. D. (1993). Social stories: Improving responses of students with autism with accurate social information. Focus on Autism and Other Developmental Disabilities, 8(1), 1-10. https://doi.org/10.1177%2F108835769300800101
• Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27(3), 215-222. https://doi.org/10.1080/1366825021000008639
• Gupta, V. B. (2007). Comparison of parenting stress in different developmental disabilities. Journal of Developmental and Physical Disabilities, 19(4), 417-425. https://doi.org/10.1007/s10882-007- 9060-x
• Guterres, A. (2020, April 16). Protect our children. United Nations. https://www.un.org/en/uncoronavirus- communications-team/protect-our-children
• Hattier, M. A., & Matson, J. L. (2012). An examination of the relationship between communication and socialization deficits in children with autism and PDD-NOS. Research in Autism Spectrum Disorders, 6(2), 871-880. https://doi.org/10.1016/j.rasd.2011.12.001
• Havighurst, S. S., Wilson, K. R., Harley, A. E., Prior, M. R., & Kehoe, C. (2010). Tuning in to Kids: improving emotion socialization practices in parents of preschool children–findings from a community trial. Journal of Child Psychology and Psychiatry, 51(12), 1342-1350. https://doi.org/10.1111/j.1469-7610.2010.02303.x
• Hedley, D., Uljarević, M., Wilmot, M., Richdale, A., & Dissanayake, C. (2018). Understanding depression and thoughts of self-harm in autism: a potential mechanism involving loneliness. Research in Autism Spectrum Disorders, 46, 1-7. https://doi.org/10.1016/j.rasd.2017.11.003
• Hendriksen, J. G., & Vles, J. S. (2008). Neuropsychiatric disorders in males with duchenne muscular dystrophy: frequency rate of attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder, and obsessive-compulsive disorder. Journal of Child Neurology, 23(5), 477-481. https://doi.org/10.1177%2F0883073807309775
• Ho, T. Q., Gadke, D. L., Henington, C., Evans-McCleon, T. N., & Justice, C. A. (2019). The effects of animated video modeling on joint attention and social engagement in children with autism spectrum disorder. Research in Autism Spectrum Disorders, 58, 83-95. https://doi.org/10.1016/j.rasd.2018.09.004
• Holmgaard, A., Pedersen, H., & Abbott, C. (2013). Animation: Children, autism and new possibilities for learning. Journal of Assistive Technologies, 7(1), 57-62. https://doi.org/10.1108/17549451311313228
• Huke, V., Turk, J., Saeidi, S., Kent, A., & Morgan, J. F. (2013). Autism spectrum disorders in eating disorder populations: a systematic review. European Eating Disorders Review, 21(5), 345-351. https://doi.org/10.1002/erv.2244
• Huremović, D. (2019). Introduction. D. Huremović (Ed.). Psychiatry of pandemics: A mental health response to infection outbreak. Switzerland: Springer. https://doi.org/10.1007/978-3-030- 15346-5
• Kandasamy, P. (2018). Early intervention of Autism Spectrum Disorder: Translating research into practice. Indian Journal of Mental Health and Neurosciences, 1(1), 1-7.
• Lin, T., Lo, Y., Lin, H., Li, S., Lin, S., Wu, H., Chu, M., Lee, C., Lin, I., Chang, C., Liu, Y., Chen, T., Lin, Y., Ian Shih, Y., & Chen, Y. (2019). MR imaging central thalamic deep brain stimulation restored autistic-like social deficits in the rat. Brain Stimulation, 12(6), 1410-1420. https://doi.org/10.1016/j.brs.2019.07.004
• Mazefsky, C. A., Folstein, S. E., & Lainhart, J. E. (2008). Overrepresentation of mood and anxiety disorders in adults with autism and their first‐degree relatives: What does it mean? Autism Research, 1(3), 193-197. https://doi.org/10.1002/aur.23
• Merriam, S. B. (1998). Qualitative research and case study applications in education. San Francisco: Jossey-Bass Publishers
• Narzisi, A. (2020). Handle the autism spectrum condition during Coronavirus (COVID-19) stay at home period: Ten tips for helping parents and caregivers of young children. Brain Sciences, 10(4), 1-4. https://doi.org/10.3390/brainsci10040207
• National Clearinghouse on Autism Evidence and Practice [NCAEP]. (2020). Evidence-based practices for children, youth, and young adults with autism. https://ncaep.fpg.unc.edu/sites/ncaep.fpg.unc.edu/files/imce/documents/EBP%20Report%2020.p df
• OEP [Otizm Eylem Planı]. (2016). Otizm spektrum bozukluğu olan bireylere yönelik ulusal eylem planı (2016-2019). 13/04/2016 tarih ve 29907 sayılı kurul kararı. https://www.resmigazete.gov.tr/eskiler/2016/12/20161203-16.htm
• Oppermann, M. (2000). Triangulation- A methodological discussion. International Journal of Tourism Research, 2(2), 141-145. https://doi.org/10.1002/(sici)1522- 1970(200003/04)2:2%3C141::aid-jtr217%3E3.0.co;2-u
• Parette Jr. H. P., Hourcade, J., & Blum, C. (2011). Using animation in Microsoft PowerPoint to enhance engagement and learning in young learners with developmental delay. Teaching Exceptional Children, 43(4), 58-67. https://doi.org/10.1177%2F004005991104300406
• Pelton, M. K., Crawford, H., Robertson, A. E., Rodgers, J., Baron-Cohen, S., & Cassidy, S. (2020). Understanding suicide risk in autistic adults: Comparing the interpersonal theory of suicide in autistic and non-autistic samples. Journal of Autism and Developmental Disorders, 1-18. https://doi.org/10.1007/s10803-020-04393-8
• Sani-Bozkurt, S., Vuran, S., & Akbulut, Y. (2017). Design and use of interactive social stories for children with autism spectrum disorder (ASD). Contemporary Educational Technology, 8(1), 1-25.
• Seggie, F. N., Sart, G., & Akbulut-Yıldırmış, M. (2017). Nitel araştırmaların raporlaştırılması. F. N. Seggie ve Y. Bayburt (Ed.). Nitel araştırma: Yöntem, teknik, analiz ve yaklaşımları (ss. 371-384), Ankara: Anı Yayıncılık.
• Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47(8), 921-929. https://doi.org/10.1097/CHI.0b013e318179964f
• Smith, E., Toms, P., Constantin, A., Johnson, H., Harding, E., & Brosnan, M. (2020). Piloting a digitallymediated social story intervention for autistic children led by teachers within naturalistic school settings. Research in Autism Spectrum Disorders, 75, 101533. https://doi.org/10.1016/j.rasd.2020.101533
• Stankovic, M., Jelena, S., Stankovic, M., Shih, A., Stojanovic, A., & Stankovic, S. (2020). The Serbian experience of challenges of parenting children with autism spectrum disorders during the COVID- 19 pandemic and the state of emergency with the police lockdown. Available at SSRN 3582788. http://dx.doi.org/10.2139/ssrn.3582788
• Tarbox, C., Silverman, E. A., Chastain, A. N., Little, A., Bermudez, T. L., & Tarbox, J. (2020). Taking ACTion: 18 Simple Strategies for Supporting Children with Autism During the COVID-19 Pandemic.
• TİHEK [Türkiye İnsan Hakları ve Eşitlik Kurumu]. (2020). Otizmli çocukların eğitim hakkı ve ayrımcılık yasağı raporu. https://www.tihek.gov.tr/upload/file_editor/2020/04/1585822889.pdf
• UNESCO [United Nations Educational, Scientific and Cultural Organization]. (2020a). COVID-19 education response. https://en.unesco.org/covid19/educationresponse/globalcoalition.
• UNESCO [United Nations Educational, Scientific and Cultural Organization]. (2020b). COVID-19 Educational disruption and response. https://en.unesco.org/covid19/educationresponse
• UNICEF [United Nations Children's Fund]. (2020). UNICEF and Microsoft launch global learning platform to help address COVID-19 education crisis. https://www.unicef.org/pressreleases/ unicef-and-microsoft-launch-global-learning-platform-help-address-covid-19-education
• Ünal, F., & Pehlivantürk, B. (2004). Otizmde erken belirtiler. Çocuk Sağlığı ve Hastalıkları Dergisi 47, 69-75.
• Van Deursen, A., & Van Dijk, J. (2010). Internet skills and the digital divide. New Media & Society, 13(6), 893-911. https://doi.org/10.1177%2F1461444810386774
• Van Dijk, J. A. (2006). Digital divide research, achievements and shortcomings. Poetics, 34(4-5), 221- 235.http://dx.doi.org/10.1016/j.poetic.2006.05.004
• Walsh, L., & Barry, M. (2008). Demystifying the Interface for Young Learners with Autism. In: IADIS International Conference IHCI 2008, part of MCCSIS 2008, Amsterdam, Netherlands.
• Weir, E., Allison, C., & Baron‐Cohen, S. (2020). Identifying and managing autism in adults. Prescriber, 31(2), 12-16. https://doi.org/10.1002/psb.1822
• White, N., & Hastings, R. P. (2004). Social and professional support for parents of adolescents with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 17(3), 181-190. https://doi.org/10.1111/j.1468-3148.2004.00197.x
• WHO [World Health Organization]. (2020). Statement on the second meeting of the International Health Regulations (2005) Emergency Committee regarding the outbreak of novel coronavirus (2019-nCoV). http://www.who.int/news-room/detail/30-01-2020-statement-onthe-second-meeting-ofthe- international-health-regulations-(2005)-emergency committee-regarding-the-outbreak-ofnovel- coronavirus-(2019-ncov).
• WHO & UNICEF [World Health Organization & United Nations Children's Fund]. (2012). Early childhood development and disability: A discussion paper. World Health Organization. https://apps.who.int/iris/handle/10665/75355
• Wright, B., Spikins, P., & Pearson, H. (2020). Should autism spectrum conditions be characterised in a more positive way in our modern world? Medicina, 56(5), 233. https://doi.org/10.3390/medicina56050233
• Yamada, A., Suzuki, M., Kato, M., Suzuki, M., Tanaka, S., Shindo, T., Taketani, K., Akechi, T., & Furukawa, T. (2007). Emotional distress and its correlates among parents of children with pervasive developmental disorders. Psychiatry and Clinical Neurosciences, 61(6), 651-657. https://doi.org/10.1111/j.1440-1819.2007.01736.x
• Yıldırım, A., & Şimşek, H. (2016). Sosyal bilimlerde nitel araştırma yöntemleri (10. baskı). Ankara: Seçkin Yayıncılık.
• Yin, R. K. (1984). Case Study Research: Design and Methods. Sage.
• Yirmiya, N., & Shaked, M. (2005). Psychiatric disorders in parents of children with autism: A metaanalysis. Journal of Child Psychology and Psychiatry, 46(1), 69-83. https://doi.org/10.1111/j.1469-7610.2004. 00334.
• Zwaigenbaum, L., Bauman, M. L., Fein, D., Pierce, K., Buie, T., Davis, P. A., Newschaffer, C., Robins, D. L., Wetherby, A., Choueiri, R., Kasari, C., Stone, W. L., Yirmiya, N., Estes, A., Hansen, R. L., McPartland, J. C., Natowicz, M. R., Carter, A., Granpeesheh, D., … Wagner, S. (2015). Early screening of autism spectrum disorder: recommendations for practice and research. Pediatrics, 136(Supplement 1), S41-S59. https://doi.org/10.1542/peds.2014-3667D